3 days, 50 miles closer to a cure for multiple sclerosis

Often when people hear of the Challenge Walk MS Cape Cod, they'll respond, "50 miles, no way!" or "$1,500 fundraising minimum, impossible!" It is refreshing to come across women who feel exactly the opposite. You say, "jump" they say, "how high?" Well in this case, you say, "walk" and they say, "how far?"

Longtime friends and teammates Carley Murray and Marisa Austin have been participating in Challenge Walk MS over the course of years. Coming back to the Cape Cod rail trails faster, stronger, and always more determined.

Carley Murray and Marisa Austin

Carley's introduction was somewhat unexpected. As a grad student, she reached out to her study buddy hoping for some company hitting the books. It turned out, Katie was busy training for Challenge Walk MS. Being resourceful, Carley decided to study on the go, becoming Katie's training partner and soon her teammate at the Challenge Walk MS Cape Cod. Carley is connected to MS in a multitude of ways, as is often the case, and it has been fueling her participation for years and her motivation to fundraise.

Marisa could be considered a fresh face in the Challenge Walk MS mix. She'll be embarking on her second Challenge Walk MS experience alongside Carley. After a close friend of hers was diagnosed, she asked the question I feel we have all been tasked with, "What can I do?" Her answer was countless miles, a couple of September weekends, and as of today, fundraising over $7,000! Not only a Challenge Walk MS participant, Marisa has participated as a MuckFest MS volunteer and a Walk MS participant in West Hartford, CT.

When asked why they participate, the answer was simple, "Why not?" As skilled, healthy women they feel grateful for their ability to walk 50 miles and at times, challenging themselves to do it the fastest!

While training, Carley inadvertently became a half marathon runner, completing over ten half-marathons since beginning her Challenge Walk MS journey. Carley describes her Challenge Walk MS participation as taking her skill sets and putting them to good use. Not only is it paying it forward, but maximizing her time and potential for the betterment of her community, whether that is MS, the board for the local animal shelter, or advocacy for other organizations.

Similarly, Marisa has gone the extra mile. She has worked hard to balance an intensive career and diligent training regimens, pushing through the pain and her physical limits. On top of her hard work, she offers her community exciting fundraising experiences. Both Carley and Marisa host bar events and Yankee ticket raffles, consistently engaging their friends and family year after year.

They have described the Challenge Walk MS finish on Cape Cod, just as moving as it is surprising. To think they have walked alongside people who are in fact living with MS, but cease to waver mile after mile. It is inspiration they need to continue training, fundraising, and walking to make a difference in the lives of those living with MS. The motivation goes beyond their personal connections, but for all the friends they have made at Challenge Walk MS along the way.

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My first year at Challenge Walk MS was an intimidating one. Although the event was only a few years old, it seemed like everyone else already knew what they were doing. I didn't — had I trained enough? Was I wearing the right shoes? What if I have to pee? There were plenty of people cheering me on… but only one person demanded I get out there and fight the good fight. In full Army uniform and filled with bluster, The General ordered hundreds of walkers to keep up the pace and cross the finish line in the fight against MS.

This imposing figure's encouragement wasn't just bravado. In my thank-you letter to my donors that year, I wrote of my personal encounter with The General:

Walking 50 miles is an exhausting experience not only physically, but also emotionally — but it’s also very rewarding. Around mile 27, I thought I was walking alone … until the General pulled up alongside me on his bicycle. A 70-year-old retired Army vet, the General volunteers every year to be at key points on the route, loudly and enthusiastically urging us on. As he slowed his bike to my pace, he quietly told me, "There are a lot of bystanders in life. You’re not one of them. Thank you for walking for my bride."

The General was a mainstay of Challenge Walk MS, showing up every year on foot, on bicycle, and in Humvee — but it wasn't until almost a decade later than I even knew his name. In 2012, I had the honor of interviewing John Keefe Jr. for a podcast that featured the personal stories of Challenge Walk MS's heroes. In that discussion, I found a man very different from the one on the trail: a man who spoke quietly of the demands of being a caregiver, and the battles he'd fought to become that person.

In both his private and public lives, John Keefe was a tower of resolve — someone we all counted on to motivate us across Cape Cod every year without end. And so it was such a shock to learn that John passed away last week, leaving behind his wife, four children, seven grandchildren, and hundreds of friends and fans in the MS community.

Many of those friends immediately took to Facebook, sharing their own memories of sharing the Cape Cod Rail Trail with the General:

"We are together today and are brokenhearted to learn of his passing. He has had a high impact on our walker community for a long, long time. We will all miss him deeply and plan a special tribute to him this year at Challenge Walk." –Lori Espino, President, National MS Society, Greater New England Chapter

"He helped me every time I had to use the damn wheelchair, including the first time; he let me have my meltdown, then told me to get my 'ass back on the trail and beat the shit out of the pavement'. Hoo-rah, Sarge! I love you and my heart is heavy and hurts and the tears still roll down my cheeks." –Heather Hancock

"A heartbreaking loss. John was a hero, a great human being, whose joy for life elevated everyone he met. We are all so fortunate he was part of our world. I salute him and will carry him in my heart always. September will never be the same." –Steve Sookikian, former Associate Vice President of Communications, National MS Society, Greater New England Chapter

"Tom and I are so saddened by this news. I never thought there would be Challenge Walk without the General. He was such an inspiring person to so many. He will be sorely missed." –Leslie Baldi, team co-captain, Baldi's MS Busters

"Just terrible news, but what an honor is was to have had the chance to come to know him. My entire family will miss seeing him down there, but his spirit and drive to encourage us on when things got tough will always bring a smile to our faces as we fondly remember him." –John Steinmann, team co-captain, The Sole Train

"I can't believe it. I am so devastated. He was always ready with a smile and a hug. The year I took my final steps over the finish line, he was right there cheering me on and then gave me hugs… He was like a loving 'dad' to us on the course with encouragement, caring, love, high fives and hugs. He will be truly missed, and my heart is broken for his family." –Nicole Monfredo, team member, Walk With Wheels

"Heartbreaking news. He was such a wonderful man and had a huge impact on my life. I can't imagine the walk without him. He was a special person who touched so many lives. Can't stop crying…" –Patricia Thorpe, team captain, Blister Buddies

"Wow, complete shock. What an amazing man he was. His memory will live on. I will always remember that music blaring, him screaming tunes at us, hugs every time you saw him, words of encouragement and wonderful stories. He was the type of person who truly impacted everyone he met. And as we know — HUGE mascot of our MS family. I'm heartbroken, but I feel so lucky to have been able to call him our general." –Cassandra Milone, team captain, Pino's Fighters

Thank you, General, for all that you've done for us. You touched us all, and we know you'll hear us when we "Hoorah!" on the Cape this and every September.

Ken joined the MS Challenge Walk in 2005, more than a decade after his mother was diagnosed. After walking for three years and 150 miles, he switched to the support crew and now rides his bicycle along the trail, providing whatever encouragement (and snacks!) he can to the 600 walkers. He is also an alumnus of the event's steering committee and is this site's webmaster.

When we first decided to participate in the MS Challenge Walk, we were walking for our mom. As children, we watched our mom suffer from the debilitating side effects of MS. First, the loss of her mobility; then, the use of her arms and hands followed by her speech and her sight.

After her ten-year battle with MS, she lost her life. As children, we felt powerless and hopeless. There was nothing we could do to save our mom. As adults, we made the decision to walk in her honor hoping that it would give us a sense of peace.

The walk has given us so much more! Today, we still walk for our mom but with a sense of hope — hope that there will be a cure. We walk knowing that when we return next year, there will be new research and better medication for people with MS, and that the 50 miles we walked helped to fund that research.

Today, we walk not only for our mom, but also for our MS family. We look forward to coming back each year, and we are truly thankful for the relationships we have built over the last three years as MS Challenge Walkers.

Tara has been participating in MS Challenge Walk since 2010 in honor of her mother, Susan, who was diagnosed with MS in 2003. Her mom is her greatest inspiration, and this is just one way team Sweaty Already, which consists of Tara, her twin sister Shelley and their respective husbands, gives strength to those with MS and their families each year. Tara lives in Halifax, Massachusetts with her husband, Brian, who has been walking alongside her at MS Challenge Walk since 2010.

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I am excited to introduce myself as your new Volunteer Manager for Challenge Walk MS! I just started work at the Greater New England Chapter for the National MS Society at the end of 2015, and I am ready to get moving!

I have spent the past four years designing and testing medical software and am welcoming a fresh start with a new career change. I interned and volunteered in college with the National MS Society in the Finance department and loved it so much that I was drawn back in! I'm very familiar with the New England area, growing up in Southern New Hampshire, living in Providence, and now just outside of Boston. As you can imagine, I am thrilled to be working with this close-knit community!

I know Challenge seems far away, but let's get revved up and keep the anticipation alive all year 'round! Be on the lookout for future posts and updates from me. I'm beyond excited to get to know everyone. Please feel free to reach out with any questions, concerns, past experiences, or advice moving forward. I would love to hear from you! I can be reached at sarah.chuckran@nmss.org or 781-693-5156.

Sarah is the Volunteer Manager for the Greater New England Chapter of the National MS Society. She is responsible for managing volunteers for all Walk MS events in Massachusetts and New Hampshire, as well as Challenge Walk MS. Sarah grew up in Southern New Hampshire and now lives outside the Boston area. She interned with the Finance department for the MS Society, Greater New England Chapter in college and is excited to be back!

I was around 19 years old when I found out my mother was diagnosed with MS. I remember not really knowing how to react, except to be immediately concerned and start asking questions. What is it? Is there a cure? How will this affect her? What can we do?

I mean, it obviously sucks that she has MS. No one wants to see someone they love be uncomfortable or debilitated in any way. But, I think what my mother does particularly well, is not make it an issue. We never talk about it with any sense of gravity. Of course we ask her how she is feeling but she is not one to make it into something bigger than it needs to be. There are, as we know with MS, good days and bad days. But she rarely will give the disease the attention it craves. She dictates the power the disease has on her, not vice versa.

"She dictates the power the disease has on her, not vice versa."

Don Fanelli on his mom's MS

And that's how she lives. When you meet her you wouldn't really know something was wrong, unless she was feeling numb or going through an episode and even then she would probably diffuse the situation by being brutally honest and making you laugh. And that's what I take away from her. No beating around the bush. Be honest, and usually there is humor to be found in the humanity of it all. I was just so overwhelmed when she finally retired and I found out how many sick days (80) she racked up as a teacher's aide helping emotionally disabled children. I just thought that was some ridiculous work ethic and selflessness and I was just so damn proud. I think it goes back to trying to be in control of the disease, and not letting it be in control of you. By focusing on helping others, it put the attention on them, not you. Therefore my mother could focus on service and not pity, which I believe helped aid in controlling the disease in some way.

"I keep thinking about how I could complete the whole walk in about an hour if could just use a car."

Don Fanelli on walking 50 miles in Challenge Walk MS

It definitely has sunk in that walking 50 miles is pretty crazy. Who thought of this? I demand answers! I keep thinking about how I could complete the whole walk in about an hour if could just use a car. However, I realized that I live my life doing things that really get me out of my comfort zone and challenge me mentally, physically and spiritually. I think this will definitely be uncomfortable at times, but I know focusing on the cause and my mother will be my mental and spiritual fuel…and granola bars and dark chocolate will be my physical fuel. I know there are people with MS that do this walk and it is just overwhelmingly inspiring and flat out badass.

Don Fanelli is a member of the Upright Citizens Brigade Theater in New York City and has a number of TV and movie credits to his name. This will be his first Challenge Walk MS. His team is "Donna Fanelli is a Badass".

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Ahhh… the Cape Cod Sea Camps. Our home away from home during Challenge Walk MS weekend.

Friday's route will take us 20-miles from the Hyannis Village Green right up the driveway of the Sea Camps. You will be welcomed by a cheering squad and directed to the check-in tent. At the check-in tent, you will receive your cabin assignment and details on the evening's events.

Welcome to the Cape Cod Sea Camps!

From there, the rest of the afternoon is yours to enjoy. Lounge in the sun with your team and a beer or a glass of wine. Make new friends under the Big Tent enjoying some snacks before dinner. Visit our incredible Medical Crew in the Medical Tent to soak your feet in an Epsom Salt Bath or to have your blisters tended to. Take a rest in your cabin. Get a massage.

After dinner, enjoy a slideshow of pictures taken by our talented photographers throughout the day, followed by our Evening Program. We strongly recommend attending the Evening Programs, especially on Saturday Night, which will contain our incredible Candlelight Ceremony.

(TIP: It can be dark at night, so you may want to bring a flashlight for getting around the Sea Camps after sundown.)

Below are some frequently asked questions:

Do we sleep in tents?

We do not. We sleep in cabins. The Sea Camps provides communal style sleeping accommodations with bunk beds. Every attempt was made by the NMSS to accommodate any special requests. (TIP: Bring ear-plugs — just in case you have a snoring neighbor.)

Welcome to your home for the weekend.

How does my luggage get to the Sea Camps?

On Friday morning, you will drop off your luggage at the designated luggage drop-off areas at Kalmus Beach or at the Hyannis Village Green. While on the route, your luggage will be transported to the Sea Camps and sorted by walker number. When you arrive at the Sea Camps, you will collect your bag and carry it to your cabin. For your convenience – and that of the crew members – please keep your luggage to under 40 lbs. If you need help carrying your luggage, find a crew member and they will be happy to help.

What are the bathroom / shower facilities like?

There are shared bathroom / shower houses located strategically around the Sea Camps. In addition, some of the cabins are equipped with bathrooms and showers. If there aren't any located in your cabin, there will be a bath house close by. (TIP: Bring flip-flops for the showers.)

Do I need to bring my own linens?

No, but you may choose to. The Sea Camps provides sheets, blankets, and pillows. They also provide towels – very small towels. Many participants bring a towel from home, and are glad they did.

Is there electricity?

Yes, all of the cabins have electricity. Don't forget your cell phone chargers!

Where do we eat?

A delicious breakfast, lunch (for crew and other participants at the Sea Camps mid-day), and dinner will be served at the Sea Camps Dining Hall. This is a wonderful opportunity to spend time with the new friends you will meet on the route. Make sure to note the start/end times for each meal which will be posted outside the Dining Hall — along with each day's menu.

Cape Cod Sea Camps dining — mmm mmm good!

How do I get my luggage at the end of the weekend?

On Sunday morning, before you embark on the final 10-miles, you will drop off your luggage at a designated spot at the Sea Camps. While on the route, your luggage will travel back to Hyannis Village Green, for you to collect at the end of the Closing Ceremonies.

What if I have a question that was not answered here?

Don't hesitate to reach out to the Challenge Walk Staff at the National MS Society, Greater New England Chapter.

Thank you so much for your commitment to this event and to creating a World Free of MS.

See you bright and early in a few weeks at the Hyannis Village Green!

Amy has been participating in the MS Challenge Walk since 2002, in honor of her father, who was diagnosed the year before. In 2007, she joined the Steering Committee. She feels blessed to be accompanied by such an amazing group of people in this fight against MS. Amy lives in Lowell, Massachusetts with her husband, son, and daughter.

Michelle has been a staff member for the Greater New England Chapter of the National Multiple Sclerosis Society since 2000. She currently serves as the Director of Public Policy Advocacy and works with volunteer activists and lawmakers in Massachusetts, Maine, New Hampshire, and Vermont. She most recently lead the chapter's delegation at the 22nd annual MS Public Policy Conference in Washington D.C.

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National Multiple Sclerosis Society President and CEO Cindy Zagieboylo will be participating in Challenge Walk MS Cape Cod this September. She shares her thoughts about what it means to her and also a training selfie:

I'm excited about the upcoming Challenge Walk MS on Cape Cod! The Challenge Walk MS is a wonderful metaphor for what it takes to be resilient: Setting goals (50 miles and raising funds), engaging others (some join your team and some support with financial contributions), receiving support (encouragement on the route, rest stops), and providing support (encouraging others makes us stronger). Much of what I have learned about resiliency has been from connecting with people affected by multiple sclerosis.

I plan to make new connections during the Challenge Walk MS and deepen the connections I already have. My team is called "50 Miles – All Smiles". Let's walk together!

Welcome to the team, Cindy Zagieboylo!

Cyndi began her career with the NMSS in 1985 at the Massachusetts chapter as a director of support services. She now serves as president and CEO of the national organization.